Just checking in

[TxNurseNoelle]

Hello to everyone, today is day 9 since surgery, My husband and dtr are taking a swim and since I cant join them I thought I would see if some on these symptoms sound familiar post-op, well i came home with a walker but put it away and started just trying my best to make due with this unbalanced whirly eyes not focusing at times (alot of the time) feeling I have, I am ok although at times my head just pulls to the right or straight back so cant make any sudden movements, my tongue is numb on the right side so I have to eat on the left or suck on my food to soften it, I can feel a weakness in my face although my husband tells me he cant tell, Yesterday when I got upset and cried I really did not feel tears out of the right eye and noticed alot of weakness, anyway I am trying to relax but walk, not baby myself yet dont be too hard on myself, feel guilty about not being able to run my house in top condition like ususal and release some control to others. well ok getting that off my chest felt a little better. Oh and PT came to eval on fri they are going to come 3x week to train with some balance exercise but its this whirly unbalaced not feeling right feeling I am afraid is never going to end and I had balance issues before surgery I definetely feel they worsened, oh PS I get badddd headaches! ok im done....thanks for listening...hugs and kisses

[Cheryl R]

Noelle, This is so soon post op and it DOES get better.      So many surgeries improve soon after but this was brain surgery and takes some time.             I always say the first 2 weeks really make one wonder.           Keeping up with some walking will help and I never did any PT myself but just worked on keeping on walking.                      One can have some dry eye feeling for a time even with no paralysis.              I did this with my last surgery as no paralysis but a dry eye feel for maybe 3 weeks.   I used some of my favorite Refresh Liquigel and and eventually it was better.   
  Don't push yourself either to prove that you will be normal again!     I went thru that with surgery no 1 and next time knew not to push it.                     It is frustrating to not be doing your usual household routine but it's not forever!     Just seems like it right now.          Hang in there and keep letting us know how it goes!                           Cheryl R

[Brendalu]

Noelle,
It sounds like you are really doing well!  Remember, rest and walking are your two best friends.  Don't over do and take the time to really take care of yourself.  Let the husband and daughter do things around the house.  I fretted something fierce because I wasn't getting things done like I thought they needed to be.  Fretting just causes more headaches and I really think that stress over the simple things causes us not to heal as quickly as we might in a stress free environment.....which is next to impossible!  Hugs coming your way.
Brenda

[Jim Scott]

Hi, Noelle ~

Thanks for checking in.  I'm sorry to learn that you seem to be having a bit of trouble with dizziness and a few other issues but I'm pretty certain they'll eventually resolve, although probably not as quickly as you might prefer.  You're less than two weeks post-op and should not expect to be anywhere near 100% this soon.  Most post-op AN patients aren't.  Walking is always good 'therapy' for imbalance.  I did a lot of it in lieu of 'formal' balance exercises.  After 3 sessions, my PT told me I didn't need further exercises but to walk as much as possible.  I followed that advice and it paid off.  I also tossed a small beach ball back-and-forth with my wife to help with eye focus.  An easy 'exercise'.  After 3 years, I still have a very, very mild case of 'dry eye' but don't require eye- drops or gel.  Usually, just blinking rapidly a few times does the job.  I still have the same small 'numb' spot on my tongue that I had immediately post-op.  I assume it's permanent.  If so, I can live with it.  I still hope that one day I'll notice it's gone.  My face is about 10% weaker on my (former) AN side (my left) but completely unnoticeable to others and barely perceptible to me - and only when I think about it.  No headaches.  My point is that many post-op issues are temporary or lessen in intensity.  Even if they don't improve 100%, you'd be surprised how well we can adjust to physical deficits. 

Letting go of some control while you recuperate is difficult.  I state this based on my own experience.  However, its usually necessary and definitely temporary.  Let someone else be the caregiver for a bit.  You've undergone serious brain surgery and need some time to recover before resuming your normal activities.  I believe your attempt to not 'baby' (indulge) yourself or be so hard on yourself that you make things worse and feel unnecessarily guilty just for needing to recover is sensible and should be successful.  Time passes quickly and I'm sure you'll be improving quite soon.  Meanwhile, thanks again for letting us know how you're doing and for sharing your thoughts with us.  Now, rest. 

Jim

[Rich56]

Hi Noelle,

It is great that you want to get back to doing things on your own, but you should let others take care of you right now.  You are trying to heal, and pushing youself will only hurt your recovery and your mood.  Relax, concentrate on YOU!  Things will return to normal in due time.

When Scarlett was well enough to get out of the house, we swung by the local pharmacy and picked up an inexpensive cane to help with those wonky-head moments.  She only used the cane a few times.

Hope you feel better with each new day,

Rich & Scarlett

[CHD63]

Noelle .....

I'm sure many of us can identify with what you are feeling at 9 days out.  I agree wholeheartedly with what the others have said already.  You will feel better, but it probably will not be as quickly as you would like.  As females we are often the ones in charge of the household things and it is difficult to watch others do them differently than we would ..... one of the hardest aspects to recovery for me.  Actually, it has been a learning experience to realize the house did not fall apart during that time!  

Thoughts .....

Clarice

[leapyrtwins]

Thanks for updating us, Noelle.

Recovery takes time, but you'll get there.  Patience is key - and remembering that you've been through a lot.

Keep your chin up!

Jan

[TxNurseNoelle]

good morning from texas, have a question, has anyone had numbness to their tongue on the AN side with taste distortion? if so how long did it last? I find I choke on things, I have to move it to the left side of my mouth I dont have facial droop but I feel it weaker on that side and if I get tired it gets worse, last night I fell in the shower thank god I didnt hurt myself but I stood up from the shower chair and its as if a magnet just pulled my head into the wall then I noticed after ward the balance was waaay off like the floor was tilting for about 1hr very weird and then other times its just that "wonky" head balance thing anyway just wondering if this sounds familiar?

[Kaybo]

Noelle~
This all sounds VERY familiar to me & the good news is that it should dissipate with time!  I only chew on the right side but I have total facial paralysis - I know that many have commented on the taste thing and that goes away too - different times for everyone but I am sure someone will chime in.  So sorry that you fell but so glad you are OK...you probably want to do things like that in the MORNING when you are the most rested!   

K
PS- I will try to call you soon - I have "something" wrong with me and we were hoping it would be better today - it is not (I have pains in my head when I move my eyes) - after a shot and 2 scripts.  If it is not better tomorrow, they are going to do a MRI.  I DON'T have time for this!!

[TxNurseNoelle]

Oh no Kay I sure hope its nothing major? My thoughts and prayers are with you and when you want to call to talk I am here to listen.Hugs to youxoxoxNoelle

[Kaybo]

I'm sure it is no big deal but my optimism is being to fade a bit...I really thought that it was a sinus infection without the gunk or something on my "bad" side that I really couldn't feel but it hurts the most over my "good" eye - I think if it were a SI, it would've started responding to all the meds...CRAZY!

K

[Cheryl R]

I sure hope it is nothing bad for you!           Why does this have to happen before a trip?               I am having some left jaw pain which looks like could be some TMJ.     Comes and goes but seems to fit what I have read about it.   
                                                        Cheryl R

[epodjn]

Noelle,
It all sounds so familiar, sorry, I know it's not any fun. I'm 8 months post-op and my tongue is still numb on the AN side. And I still have the taste issues but they seem to be getting better lately. At first I thought maybe I had an infection or something the taste was so bad, but the dentist said it was just the nerves being weird. I'm not sure if the numbness will ever go away. I'm at the tingly/numb stage and it drives me crazy some days.
Keep trying to walk. That was the best therapy for me also. On those wonky head days just give it up and rest. I was always trying to fight it and act tough and it really just set me back. As someone else said, rest and walking are the best combo for recovery.
Julie

[TxNurseNoelle]

Hi to all well I had a very strange weekend fri night i had a very bad head pain i say pain because it was pain not an ache well ok let me back up I got my staples removed fri on the way home i had pain under my ear to my jaw an side took a loratab got home and by night time started with head pain it settled over my forehead and eyes excruciating well by sat got worse and started vomiting low grade temp stubborn as i was would not go to er thankfully friend had a phergan to stop vomiting well that was my sat and finally by sunday afternoon it stopped except low grade temp pain to ear and jaw and my face drooped more now my eye wont close and definelty have more facial drooping did call dr they will see me tomorrow and started on steroid anyone out there have this?i am two weeks post op oh and p.s. did call neuro sat morn well hubby did took three calls and eight hours to get call back and just said go to er if symptoms too bad which thankfully they subsided anyway just wondering if anyone had postop probs similar to this hugs to all

[moe]

Noelle,
So sorry to hear about your setbacks. The first couple weeks can be stressful with things like this happening. The nerves are all stressed out and hopefully the symptoms will lessen with time.
Just take it easy, things will fall into place.
It took me a good 6 weeks to get back to a semi normal state- we all have different stories to tell. Mine was extreme shortness of breath and weakness due to major blood loss, which is uncommon.
And the facial paralysis was a surprise
Lots of rests, liquids, walks as tolerated, let delegate, delegate!
Maureen